Living With Chronic Pain

New York Time's Best seller Lauren Hillenbrand talks about living with ME/CFS and how writing gives her a wonderful escape.

Laura Hillenbrand is best known for authoring the New York Time’s Best Seller Seabiscuit. The book was ranked number one for 42 weeks, earned two literary awards, and was later used as the framework for the movie by the same name. Her second book, Unbroken, was released in November 2010. It is a story about an Olympic runner in World War II, who was marooned on a raft after a plane crash. He and his companion were rescued by the enemy— and held in a POW camp. Unbroken is a true tale of survival, strength, and resilience. She is also known for her struggle with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, or ME/CFS. She has lived with the disease for more than 24 years and has found natural ways to work through it and inspire others to do the same.
Being diagnosed with ME/CFS, can you describe “a day in the life of Laura” and how it affects you?
ME/CFS is characterized by staggering exhaustion, fevers, sweats, chills, swollen lymph nodes, balance disorders, cognitive problems, light sensitivity, and many other symptoms. I deal with all of those. My physical life is defined predominantly by exhaustion. I have only a tiny portion of the energy that a normal person has.

I feel especially weak and sick in the morning, so after getting up, I eat breakfast at my desk, then I just sit quietly for several hours, writing or listening to audio books. On a good day, I can shower after lunch, but I have to use a shower chair. After my shower, I again have to sit for an hour or two while I recover from the effort. I usually spend that time writing. My energy peak is usually in mid afternoon, and on a good day, I can usually get downstairs and perhaps go out in my back yard tosit. Sometimes I can make a very simple meal. I rarely leave my house these days; I am just too weak, and if I overdo it, it can leave me so profoundly exhausted that I can’t sit up, or even speak. I spend every evening
upstairs, sitting on my bed, watching TV. It’s a very, very quiet life.

The other major symptom for me is vertigo. I live in an unending state of dizziness, even in my dreams. It makes reading and writing exceptionally difficult and miserable—a particularly cruel fate for a writer. I have to adapt my life to cope with this dizziness. I have my computer monitor up on a platform, which seems to reduce the dizziness that looking at the screen triggers. I have bookstands to hold up material, because I get dizzier if I have to tip my head down. I take a lot of breaks during the day to look out my window and focus far away, which calms the dizziness. Reading anything off of a printed page, as opposed to a computer screen, is exceptionally dizzying, which makes conducting research a very miserable and slow process for me. I have to read printed matter only in very brief installments, and I can do so only on less dizzy days.
What are some natural treatments and/or ways you use to cope with ME /CFS?
I’ve been doing yoga for about a decade now, and it has been a godsend to me. Even when I’m quite ill, there are a few poses I can still do, and it’s wonderful for my body, keeping it flexible and maintaining muscle tone. It’s even better for the mind. Yoga relaxes me, alleviates stress, and quiets my thoughts. There is a beautiful and nourishing mindset that attends yoga, focusing on acceptance of yourself and your situation, living in the moment, awareness of the interconnectedness of all things, and cultivating gratitude for your blessings. There is so much loss, so much anguish, and so much stress involved in being as ill as I am; yoga helps me cope with it and love my life and all I have been given.

Along with yoga, I practice meditation. No matter how sick I am, I can always meditate, and it always refreshes me and fills me with optimism. In spite of what the disease does to me, I’m a very happy person, and I credit meditation for much of that. In my sickest years, I sometimes meditated three times a day.

I am also careful about the chemicals that go into my body. I try to buy products that are natural. I buy products from companies like Loving Naturals, which sells products that are organic, simple, natural and absolutely safe. I try to do this especially with products I use every day, like moisturizers and lip balms. Also, we only use nontoxic, natural products in our home, because we don’t want to breathe in harsh chemicals, and we don’t want to pollute the environment.

What would you say to those people who say ME/CFS is simply a case of laziness and selfishness ?
Fortunately, those who dismiss ME/CFS are few and far between now. There are now more than 4,000 published studies demonstrating that CFS is as real, and [as] debilitating as cancer, heart disease, or any other disease. [It] is every bit as serious and usually far more incapacitating. The evidence is simply unequivocal; those who dismiss ME/CFS are simply ignorant and misguided.

I’ve seen an enormous change in the public attitude about ME/CFS. I first began speaking and writing publicly about my illness ten years ago, when Seabiscuit was released. As I tried to educate the world about it, I encountered quite a few people who were dismissive and even hostile. After I appeared on 20/20, radio talk show hosts in one major city publicly mocked me for my supposedly fake illness. A decade later, I’m again doing a huge amount of speaking and writing about it as I publicize Unbroken. The reception is vastly more sympathetic, and people are much better informed. We have clearly made progress in teaching the public what ME/CFS really is, and how catastrophic a toll it takes [in people’s] lives. This is a great milestone, because with understanding comes research, and hopefully someday, a cure.
What advice would you give to others out there who suffer from ME/CFS?
The most important thing I have learned in my 24 years with this disease is to listen to my body. Everyone with this disease has different boundaries, and we find out through trial and error where they are. It’s critical to know where they lie, because when ME/CFS patients overextend themselves, the result can be utterly disastrous. Several times, I have overdone it, leaving myself bedridden and desperately ill for years. Because many patients have been accused of merely being “lazy”—something I heard all the time in my first years with ME/CFS— they often push themselves too hard to prove they aren’t malingering. I did this myself, and paid dearly for it. So my advice is to always put your body first, listen to what it is telling you and respect those signals.
Can you tell us about how you came up with the idea for Seabiscuit?
I discovered Seabiscuit when I was a child. Every May, a fair was held across the street from my house, and one year, they had a table stacked with paperback books. For something like a quarter, I bought a little paperback called Come On Seabiscuit, a delightful book about the horse, written for young readers. I read it so many times that the cover came off of it, and the story stayed with me throughout my youth. When I reached adulthood and began to write professionally, I was drawn back to Seabiscuit. I dug up fascinating information about the men who campaigned him: the bicycle salesman-turned-millionaire automobile magnate who owned him; the frontier cowboy who trained him; and the half-blind failed prizefighter who rode him. There was a fascinating untold story there, and I knew I had a book on my hands. I spent five years writing it.

Writing is my escape from this disease. I feel ill, sometimes almost unbearably so, all the time, and the disease has trapped me in stillness. This is why I choose subjects who live emphatically vigorous, bold lives, and in my research and writing, I crawl into their stories and live those lives with them. My work takes me out of this body, and out of this house, and lets me have a rich, full world that my illness has denied me. I draw immeasurable joy from that.

Why did you decide to write Unbroken? What was it about the topic that drew you to it?
Seabiscuit led me to Unbroken. My subject, Louie Zamperini, was a famous athlete at the same time that Seabiscuit dominated headlines, and in researching the horse, I kept stumbling upon stories about Zamperini. I wrote down his name, and when I was done with Seabiscuit, I tracked him down and wrote him a letter. He wrote back, and I called him. That day, he told me what happened to him in World War II, and my jaw hit the floor. I had never come across so extraordinary a life story. I knew I had a second book to write.
Do you plan to write more books?
As long as my health allows, I will write. I love the escape from my body that writing nonfiction provides, and I love interviewing subjects about their lives. The process of chasing down sources, cross-checking facts, and immersing myself in another time and place is thrilling to me. And I love learning so much in the course of writing a book.
The Washington Post wrote “Journalists have liked pointing out the irony of Hillenbrand’s work: A woman for whom walking around the block constitutes a marathon writes about the finest specimens of physical endurance.” How do you feel about this? Do you agree or disagree?
Well, it is true that I am physically diminished by this disease, and it is true that I write about individuals who are blessed with an abundance of what I lack, so yes, her statement was true. Writing about the strong, the enduring, the vigorous, is my way of completing my experience in the world, of joining them and partaking of all that I yearn for.